A new chapter for the Advisory Group for Data

Before I look forward, I want to acknowledge what has come before. Kirsty Irvine has led AGD since its establishment, and the Independent Group Advising on the Release of Data (IGARD) before it. Her stewardship through the transfer of NHS Digital's functions into NHS England, and through the standing up of AGD as a new advisory body, has given us a foundation we can build on with confidence. On behalf of all members, my thanks to Kirsty for her years of careful, principled leadership.

AGD is made up of independent representatives including clinical, ethics, research, and lay members who provide patient and public insight. It also includes NHS England members, alongside an independent Chair. 3 new independent members have joined AGD alongside me, all through open public recruitment. Like all independent members, we hold no employment with NHS England and bring our own expertise rather than represent any organisation. The new specialist members are Mr Christopher Barben (surgeon and former medical director), Dr Mark McCartney (GP with a broad clinical and informatics background) and Professor Jo Knight (researcher and academic). My own background spans medicine, law and information governance, and includes previous service on IGARD.

So what does AGD actually add? 3 things, principally.

Advising on cases and on the wider system

Some data access decisions are novel, some are complex, and some are finely balanced, involving competing benefits and risks, public expectations that pull in different directions, or technical questions where the right answer is not obvious. AGD exists to look at those cases carefully and independently. Beyond the individual case, we also contribute to the precedents, standards and processes that shape routine decisions across the system. One good precedent shapes many subsequent decisions. Our advice helps NHS England both to enable beneficial use of data and to prevent use that should not happen. Both are wins for the public.

Bringing different perspectives to bear

A data access decision can look different through a clinical lens, an ethical lens, a legal lens, a statistical lens, an information governance lens, or the lens of someone whose own data might be in scope. AGD is the place where those perspectives meet, on the same case, at the same table. That is unusual, and it is a large part of what makes the advice better than any single discipline could produce on its own.

Sustaining public trust

Health data is some of the most sensitive personal information held by any public body. Public confidence in how it is used is not automatic. It has to be earned, and re-earned, over time. Independent advice that is rigorous, transparent and auditable is part of how that confidence is built. AGD is built into how NHS England makes decisions about data: an external check that keeps the system honest with itself.

The coming year will be one of change. NHS England's responsibilities for data are expected to transfer to the Department of Health and Social Care, and AGD will continue its work through that transition. If anything, the case for independent challenge is stronger during periods like this one. Patients, the public and the system all need confidence in how data is being accessed and used, regardless of which organisation holds the responsibility or what framework is in place.

AGD has a good foundation, capable members, and a clear purpose. The work ahead is to make the most of all 3.